A summary of recent developments

After a lot of activity on this issue over the past 6 months, a phone conference was held with a number of other support groups that are interested in these difficulties with medicine access, to brief them on the work done. This resulted in support for the approach taken and thanks to LDNZ for the leadership taken on the issue. The groups involved endorsed a joint approach from LDNZ and NZORD to pursue these issues on behalf of the groups interested.

Performance report to June 2018

Rare Disease Epidemiology – 2nd Edition

In mid-2017, John was invited to write a preface for a book called Rare Diseases Epidemiology, which concentrates on the work done for LDNZ and ISMRD and talks about what patient advocates can achieve.

Here’s the link to the PDF or you can pay for and download the book here.